ALS and the Financial Burdens it Presents to Families Living with the Disease

Thomassons

People living with ALS and their caregivers face substantial financial burdens accessing and understanding insurance coverage and paying for medical treatments and services, causing high stress, added work burden and tremendous debt for individuals in the ALS community. No one understands this more than Jimmie and Dennis Thomasson in Mobile, Alabama.

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Thomassons on their wedding day

Jimmie and Dennis met in Ohio in 2017, while they were working as insurance adjusters. Little did they know, they were both from Alabama living just 45 minutes apart. After a few years of dating, Jimmie sold her house in Brewton and moved to Mobile with Dennis. The two were married in January 2020, excited for the next chapter in their lives. Little did they know the new chapter would include an ALS diagnosis just eight weeks after their wedding. 

The financial challenges began almost immediately for the couple. Dennis could no longer work, and as his symptoms progressed, he was unable to be left alone. He continues to get weaker every day and without family around who can help take care of him during the day, Jimmie is unable to work to provide for their financial needs. “I am terrified for the future,” says Jimmie. “We are alone, completely alone.”

Dennis is under 65 and didn’t qualify for Social Security Disability Insurance (SSDI) benefits to help with his expenses. After months of telephone calls to their local Medicare office, Jimmie became increasingly frustrated as she continued to receive conflicting information, depending upon who she spoke with. Finally, Congress passed the ALS Disability Insurance Access Act in December 2020, making Dennis eligible to receive benefits, but that’s not what happened. Jimmie said even though the law passed, the local Medicare office continued to deny them coverage, and most people she spoke with in the office knew nothing about the law’s passing. Months later, Dennis is just now beginning to receive payments.

The benefits they are now qualified for, however, are not nearly enough to cover their overwhelming expenses. Jimmie and Dennis desperately need in-home care, but Medicare only provides a wage of $7.25/hour for five hours a day, five days a week, which is not enough time covered for her to be able to work. To make matters worse, she can’t find anyone who is qualified and willing to take on the job, especially at that rate of pay. She and Dennis would be required to pay out-of-pocket anything above and beyond the minimum wage to bring anyone into the home to help, something they just can’t afford.

The lack of clarity of information also continues to be a problem. Jimmie and Dennis were told the cost of his procedure to get a feeding tube would be covered 100%, yet they received a sizable bill after the fact. “We can’t catch a break,” says Jimmie. Through Medicare, only 80% of medical expenses are covered requiring them to pay the remainder. While there are supplemental policies she could purchase to help ease that burden, they are so expensive she can’t afford to pay the monthly premiums to have one.

Jimmie said they have been fortunate to receive support from The ALS Association Alabama Chapter and other local ALS organizations. They have had access to loaner equipment and resources they otherwise could not afford which helps, but it’s not nearly enough. They are currently living off the proceeds Jimmie made from the sale of her home in Brewton, the only money they have left.

Jimmie is doing her best to cope with their daily challenges, finding comfort in Dennis and his positive attitude. Dennis tells her daily, “Honey, it is good until it’s not,” she says. When asked what advice she would give to families who are faced with an ALS diagnosis, she said, “Don’t stop. Keep pushing. Contact the right people. And don’t take ‘no’ for an answer.”

In the meantime, they are fighting this disease together and making every moment matter. “Dennis is my love and my life, the strongest man I’ve ever known. If he did not have such a happy disposition, I don’t think I could have stayed as emotionally intact as I have been. Our love for one another is our strength,” she said.

To learn more about the needs and financial burden people living with ALS and their families face every day, the results of our ALS Focus survey can be found HERE.

Special Thanks to Jimmie and Dennis for allowing us to share their story during ALS Awareness Month. Click here to learn how you can help.

Comments

Submitted by: victoria R. on Wed, 05/19/2021

I have SS and Medicare. I do not have Disability SS. Would this pay more? I have ALS.

Submitted by: Amy L. on Thu, 05/20/2021

Hi Victoria. Please contact your local Social Security Administration office by going here: https://secure.ssa.gov/ICON/main.jsp. You can also call toll-free: 1-800-772-1213.

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